Doctors are certain….they are uncertain!


There was a collaboration meeting today of some of the major teams involved in Ryleigh’s care. They have determined that they know that right now, they are not sure what has caused her medical issues. They are still investigating and that the results are going to take awhile to compile. They have different theories but are still unsure….

1. Crohn’s — prednisone working and she is not having gut pain or symptoms. However, currently her flare up is like a Crohn’s colitis. Her inflammation is in the large intestine. Ironically her blood thinning intravenous medication Heparin has shown in some case studies (the doctors are busy doing research on her!) can be used to help with reducing flares in the large intestine. This might help Ryleigh and possibly avoid bowel surgery.

2. Blood Clot and clotting issues with blood – The blood clot is currently being treated with blood thinners to stop the growth of the clot, filter to keep smaller clots from reaching the upper body, and resting with small movements activities. Her leg is very painful and she is learning to manage the pain in a variety of ways.They are still considering vascular surgery because they are concerned by the size of the clot,(underneath belly button to below her knee yes,one whole clot). Apparently, the clot will take some time for the body to naturally absorb it and they are concerned that the vein walls will stretch and become damaged resulting in long term issues. So we are still waiting to find out. It will take awhile for results on why her blood was clotting — it could be her IBD or a blood disorder.

3. Brain Lesion — her brain injury is still a mystery. They have ruled out a clot and a tumour but they are still trying to figure out if it is inflammation or infection. But unsure what form. They are going to do another MRI on Friday to check over things. She still has the palsy on the right side of her face. She has been working on using her face muscles and her smile has improved slightly. She is using the tips the occupational therapist to help her with eating. We are all learning to follow these tips so that she will not choke. The big one is to not talk or distract her when she is eating. She is eating simple foods that are not hard or crunchy. She has found it difficult to eat some things and is making the conscious effort to try and improve her eating skills. She is scared that she may choke.

So basically, we are not clear about why this is all happening but every medical department except for one is working on her health concerns. It is a process of collaborating, assessment, and decision making.

About WiseMindedLiving

Mindful living and a thoughtful attitude are the focus for Johanna as she navigates the paths of life that are sometimes daunting. Her journey as a mother and educator are interwoven as they are the primary motivators for her stories, reflections, and wondering.

1 thought on “Doctors are certain….they are uncertain!

  1. Thanks for the update Jo! You and Ryleigh are such an inspiration to so many people including me. You are strongly fighting for Ryleigh and blogging about it not letting the stress turn you into a lizzard brain. It has been neat to see all the activities and hear the talk about you and Ryleigh at EDS. Sending you love and healing ….

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